Living With A Brain Tumour

My Story...

My name is Mandy.  I am 53 years old and just over a year ago, completely out of the blue, I was diagnosed with an Oligodendroglioma brain tumour.  This is a devastating disease.

Prior to this I was enjoying a normal everyday life working as a primary school teacher and loving my husband, children and grandchild.   I will admit that at times this diagnosis has almost broken me and my family.

My Search for help...

When I was first diagnosed I searched the internet for advice, support and information but unfortunately, here in New Zealand, there are no brain tumour support charities in existence.  I found myself disappearing down a 'rabbit hole' of various overseas websites, blogs and social media posts.  Some of the information I found was helpful but much of it was irrelevant, random and did not reflect the everyday experience of Kiwis living with a brain tumour diagnosis.

New Zealand information was nowhere to be found and so I was forced to look further afield which unfortunately didn't always relate to my situation.  Other than doctors there was no one to talk to who understood my diagnosis.  There was no support regarding the change in my work and financial situation, no information about the best treatments available here in New Zealand, no online support services and absolutely no awareness of the disease amongst the public.

I guess I'm one of the ‘lucky ones’.  My particular tumour is at present slow growing and I intend to live well for  a few years yet.  So whilst I am currently doing okay I would dearly love to use this experience to make a difference and help others.

My vision...

I am in the process of starting a  Brain Tumour Charitable Trust here in New Zealand with the aim of helping everyone with a brain tumour to feel less afraid, less alone and more in control.

I also plan to provide support for the families who care for people living with a brain tumour.

I've got a group of qualified people together to help form the Brain Tumour Trust NZ. This includes an advisor from the International Brain Tumour Alliance,  an Oncologist doctor, a Neurosurgeon, a lawyer, a web-designer,  an accountant plus the partner of a woman who  recently died from a brain tumour.  They are all willing to put their own precious time and energy into this charity to help people right here in New Zealand.

What I need from you...

I have just about everything in place but I need to jump one more hurdle to make the Brain Tumour Trust NZ  a reality.  I need to register the charity with the Charities Services.  This requires  $1000 held in a bank account as an asset.  Once I do this I can apply for additional funding from other various trusts to get this up and running.

Please  support my givealittle appeal by making a donation towards the setting up of the Brain Tumour Trust NZ.   I would greatly appreciate your help.

I know that money can be tight, so please know that although big donations are lovely, just  $5 helps me get closer to my goal.   Also please share this appeal with your network so I can reach as many people as possible.

Let me know if you have any questions and I’ll be really happy to answer them.

My aim is to help people living with a brain tumour to live as well and as long as they possibly can.

If you lovely people donate more than my goal of $1000 you can be assured that it will be put to the best possible use for the Brain Tumour Trust NZ. Thank you so much!